Hi, I live in Fl in USA. After 20 years of debilitating chest pains and spasms I was recently diagnosed with motility disorder. The Gastro doctors up until now kept performing Endoscopies, Bravo, drugs insisting I had Gerd which I knew could not be the case. Finally after a manometry and endoscopy with endo flip and Botox a diagnosis was confirmed. The Botox has not worked.. in fact pain is worse. I have been on a low residue diet which seems to help a bit. It is rare that I have food stuck in throat.. more at the Les. I do not regurgitate food but saliva which in turn causes chest pain. My Gastro doc says I am at the beginning of Achalasia and thinks it will develop into Achalasia 2. Not sure if he is correct and have many more questions next week at my appointment. Just so confused and thankful I have found those with whom I may get more answers. Wondering if anyone’s Achalasia has started with EG junction outflow obstruction and borderline IEM WITH chest pain??
Achalasia : Hi, I live in Fl in USA. After... - Achalasia Action
Achalasia
Hi there. I had achalasia for just over 20 years. I think you will find that we all had trouble with the sphincter at the base of the oesophagus. As the nerve slowly destroys itself the peristalsis in the oesophagus fails but that doesn’t cause anywhere near the level of difficulty as the loss of function at the sphincter.
My oesophagus eventually dilated and dilated as food just sat in the oesophagus for hours. I found coca-cola and some of the seriously fizzy waters a life saver. It always needed to be a fresh can of cola and interestingly only pepsi and coke worked. The bubbles seemed to cause the sphincter to dilate the sphincter just enough to let food through. I also got chest pain but mine was never that severe.
After a few years I really understood my body and when and what to eat and when I would need a dilatation. I lost count the amount I had, but sometimes they were 2 or 3 a year and at other times a little less.
I did eventually develop terminal achalasia and ended up having an oesophagectomy. The Hellers myotomy gave me about five years of relief but it gradually failed. I have a few issues with the oesophagectomy but they are nothing compared to the achalasia and the fizzy drinks have messed my teeth up. But, I don’t think I had any choice. As I say, the motility failure of the oesophagus was not really a big problem.
My advice is to make sure your hospital doctor is experienced in achalasia management. With it being relatively rare (just ten new cases a year in a city of 1 million) finding someone experienced can be a challenge. I got bounced around various hospitals until I found one I was really happy with.
Let me say I am so sorry for what you have been through. The information and advice you have provided is just what I need.. a push to research and not accept mediocre care. My doctor now does say it’s more the doctor than the facility/hospital. Although I have been going on with chest pain issues for years the problem have escalated . This is the reason I am reaching out to you and others... so helpful! Thank you so much for sharing and wish you well. I’m sure I’ll be back😊
No problem. Really glad to assist. Pepita933 is absolutely right in the fact that you will become the expert. I had totally forgotten about the spasms. I did use to get these but mine were not that bad.
I have always been careful with any type of medication (and alcohol) as they/it can sit in the oesophagus and can cause erosion. I was never advised this but it just made sense to me. I strongly suggest you try and work out what may be causing your erosion and then you can limit the damage. I had endoscopies every six months for years (unless I had a dilation instead). Do ask if you need any further assistance. Not a problem at all.
You are right about the medication. I was prescribed NSAID meds by my orthopedic doctors years ago. Sure that was issue and now I rarely take anything.. actually at the advice of my daughter. Thanks !
Also another question.. did you ever get to the point where you could not swallow food , regurgitate food or food stuck in you throat? Hopefully there are different degrees as things progress and I won’t get to that point .
Thanks!
Just added a few questions to my last reply so not sure if you got?
Sorry, I missed the question. Food getting stuck gradually got worse over time. It first started with dry crackers, they just got stuck. Then it was high fibre bread, then all bread unless toasted and so on. Over the years it began to affect nearly everything. At work i would frequently have to go to the bathrooms and regurgitate to get some comfort. It sounds horrific but it was so gradual i just adjusted with it. I eventually learnt not to eat at work, As I started to develop end stage achalasia even water and saliva would just sit in my oesophagus. Having a bath helped as it altered the pressure in my chest, as would holding my arms above my head, and i would feel a massive relief as the sphincter would open and let everything through. Then I dreaded eating again.
Try and manage physical stress as that causes more muscles to tense up - including those inside. A bit of yoga maybe (not for everyone).
You will also need to watch your diet as you learn what foods are more successful just to check you get enough calories and nutrients in. I ended up on a high fat died just to help keep my weight up. Lots of ice cream and for some reason potato chips never caused much of an issue (odd as they are dry) until terminal achalasia.
Try not to fear the pathway you are on. It is honestly ok. It is an annoying disease but there are worse things out there.
I'm so happy for you. Dr ji Bang is a world wide known dr in aculacia and she has taken my case. She is so accomplished in the field and left Tampa fl and I have the poem surgery next week. It has been a scarry, painful journey with other drs stretching my throat over and over. I'm in hopes I do well. Gods in charge now.
Greetings from TX. I had achalasia diagnosed in 2014. At that time the LES sphincter had all but closed. I had a Heller Myotomy done at that time. Yes, the chest pain has been unbelievable! Have you elevated the head of your bed? First I’ve learned Gastroenterologists get maybe 1 case every 2 years in a big city in the U.S. (with a good practice). You will find you know more about Achalasia—what you can and cannot eat than they do. You are living it, they are not. You need to really research and find a gastroenterologist that specializes in Achalasia. I live in the suburbs of Houston and while there are many who will operate on you, there are only a very few that specializes. Start with the specialist! I’ve recently been referred to the head of Gastroenterology at Baylor College of Medicine in Houston. I don’t know why but Baylor is the specialty place for this area. I’ve been told people come from all over the world to St. Luke’s for this problem.The surgery you will first get is the Heller Myotomy, or the Poem. The Heller is laparoscopic, and the poem is through the esophagus. Hopefully that will be the only surgery you will need. Unfortunately, achalasia is an autoimmune disease, and it will continue to be a lifelong problem.
I take 40 mg of Omeprazole in the morning, and 20 at night. Yes, I know that seems like overkill. But it chronically felt like I had an elephant on my chest. No, no heart attack! Because we tend to have no motility, or very little, the liquid sometimes food sits in the esophagus. Especially at night. That burning of the esophagus by the acid is what is giving you such pain. (Or it does me)
So, my recommendation is to elevate the head of your bed, 2 bed risers stacked, I’ve heard 10 inches, but find the 2 risers have me sliding down the bed! Find a real specialist in achalasia. You may see them just a few times (especially for surgery) and then have a local follow you for routine follow ups. You might check Atlanta. It is a pretty big city and may have great specialists there.
Oh, and there are 2 schools of thought on soda’s, one that the are really helpful, and the other that they are bad! So one again do what works for you! You e heard the expression doctors are taught when they hear hoofbeats think of horses not zebra’s. We are zebra’s.
I woke up to find your reply and started to cry. Just to find someone who has lived with this chest pain. Not everybody diagnosed has pain so thank you for sharing.My brother lives in Houston, knows a few doctors there-so he and I can research this. The Endoscopies I’ve had in the past have signs of recent bleeding and erosions in antrum. Gastro treating me now said I do not have acid reflux(meds have not helped) but I guess the food sitting in the lower esophagus can cause the erosions. The omeprazole did not seem to help but it was a much lower dose. I will try again along with raising my head at night. Although my test indicate some spasms I am so confused if that is what causes the chest pains. All I know is that they are worse now..off and on all day and some so crushing. I see my doctor in a few days. He does not want me to have surgery at this time. My Les is not completely closed but concerned it will close more. Instead the doctor may try calcium channel blocker ,Tricyclic, and not sure what other suggestions. My daughter is a pharmacist and said with drugs I may be creating more issues. The doc did suggest contacting center for swallowing disorders at USF in Tampa Fl but that is a questionable source also. You are right.. information is so limited from doctors. I asked my doctor how many people they treat with Achalasia. Not a very clear cut answer from him other than they are the only ones locally who perform these procedures. I have a lot more questions for him this week but it may be time to move on. I have found carbonated water and soda to help at times. Not sure why but sometimes when I eat the chest pain will subside for short time. I also think the spasms are related to the saliva and gas pressure but can’t get any definitive answers. Yuk!
Anyway, have gone on long enough but so appreciate your reaching out and information you provided. Thanks so much!
If you don’t mind I may be reaching out to you again?
I had, for many years suffered with chest pain prior to a diagnosis of Achalasia. The chest pain is a combination of things: first the sphincter doesn't relax, then food builds and causes stretching and erosion of the esophagus. When the food is stuck there is an increase of pressure causing saliva build up. Food either goes down or up...I lived on NSAIDS for the chest pain. Any fizzy beverage made it worse for me, oddly even thin clear juice would worsen my symptoms. Water, no ice, was the only fluid that would help. You will be the expert on your diet and it will change over time to accommodate the failing esophagus. Dilations and Botox helped me. Heller's myotomy was the answer, for 13 years, then ultimately end stage achalasia.
Your input has been so helpful. I could not figure out why so much saliva(phlegm) and after it would come up my spasm/chest pain would subside for a bit. Lately it feels as if there is always pressure in my chest.. even without the spasm pain. I explain the saliva, gas buildup and sometimes excruciating chest pain and the Gastro doc looks at me like he’s never heard of this before! Thanks again for sharing with me😊
Don’t be discouraged. As I said in an earlier post this malady isn’t so common that the doctors we go to have the kind of experience with it we do. Yes that nasty thick phlegm is really common. I bet we all have it.
This isn’t going to be remedied overnight. You will have this disease the rest of your life. However, things can get better. It sounds like you are getting to the right place faster than I did! Some foods may be causing you more trouble than others, just start paying attention to what your body says. I’d watch out for liquids with acid in them. Tomatoes especially sauces can be a problem. I also discovered corn kernels were not good for me, but corn products (grits, corn tortillas, corn chips etc) I do really well with.
Yes.. I have just begun taking notice of my diet and what makes me feel worse. Im pretty much a vegetarian so all my raw veggies have stopped. Loved popcorn but that’s been out for a bit. I’m a pretty optimistic person and will learn to go with the flow. Glad I found this site because you and others have really enlightened me. Thanks!
Of course! Let me know when you have a question, or need to commiserate. Kwiltfun@gmail.com. Yes the chest pain chased me all day too! Mine was after I had the surgery. My latest Gastro. Told me I was taking the medication wrong. Take it 1 hour before a meal. For me taking it in the morning puts breakfast off 2 hours! I have thyroid med on empty stomach, wait an hour, the omeprazole wait an hour. Oh,I also found Zegrid or the equivalent to be more helpful. I have a lot of arthritis as well and costochondritis would rear it’s ugly head sometimes as well. Since you are experiencing chest pain I would suggest you ask your doctor if this could be a problem. It is really under diagnosed, but fairly common. (Arthritis I think of the intercostal’s. Or ribs). It often mimics heart attacks.
The specialist at St. Luke’s is Dr. Mohamed Othman. I’m seeing his second in command tomorrow I think a motility specialist Dr. Reena Chokski. I was told my latest symptoms weren’t (if I read between the lines) presenting like other’s. I just don’t want to go with the resection.
When I was starting this journey I would wake and drink maybe a quart of water trying to make it better. I think it changed the ph of my stomach by diluting it. I didn’t know why it helped it just did. Some folks get better results from Galviscon. That chalky liquid does help coat and it may be worth a try. I was referred to this specialist. You may ask your doctor for a consult with him (or whom ever you choose). The wait is several months.
Thanks again for responding with very helpful information. I too have arthritis and always questioned whether I may have costochondritis however it seems with chest pains and spasms I alway bring up saliva/phlegm and relieved. Wish there was a definitive answer on the chest pain. My manometry and esophageal endo flip showed some spasms along with Les obstruction so I have to assume that is where the pain comes from.I also find the pressure on my chest makes me short of breath. Wondering if you have had any of these issues or swallowing of food? I do not have swallowing issues yet(hope that is something that does not happen with everyone) but food sometimes feels as it sticks in throat. I know there are different stages of Achalasia . Have not been told much so don’t know if the disease always progresses to end stage
This is why I need a specialist with the knowledge to do so.
Spoke with my brother and he will help me if I decide the go to Houston. See my doc this week and think he wants me to try a calcium channel blocker. Botox did not work so this is next step.
Good luck in your upcoming doctor visit and keep in touch😊
Dysphasia is the trouble with swallowing. Yes, I have that too. It seems to go with Achalasia. The costochondritis can be checked with a physical exam! It I guess connects somewhere up in the shoulder which doctors can press and find pain. You can have pain from the esophagus and the costochondritis at the same time. I think the quick fix for the arthritis is a short burst of steroids. I’m praying for you and hope you get some answers and relief.
Hello, I've read your post and your sister is right. The institute in Tampa have me feeling so much better maybe cured I feel so lucky my dr sent my case there and a 38 year old doctor, jin bang has taken my case as I believe I was going to die. She now has relocated to Orlando health hospital in Orlando, fl. Once she took over things started happening and I had the final test for mobility test this past tues. I forgot how to spell it lol but they put a camera down my nose without the Lanicain as in allergic to it. The test was uncomfortable but I wanted to force ahead and this dr and her team are go getters so I endured it. That was Tuesday and today is Thursday and should know plan tomorrow. I beg of you to either find this dr or if she taught the drs at the Tampa swallow institute as I feel 100% better just from the botox and we will see what they do after seeing my last test. Feel free to reach out to me as my sister did the phone calls and spoke to her personally and thats when I felt like her only patient. I've never felt this good in 30 years and have hope. My number is 4077998275 susie God bless us!
Welcome and glad you are in fl as I am too. I am still going through testing but got diagnosed after my swallow test. I see a new dr this week who seems more knowledgeable. Please text me anytime. What did you mean about saliva issue? I have been choking on mucosa coming up at night. God less, Susie
Looks like you are in same boat as me! Newly diagnosed and lots of questions. I am in Palm beach county.. you? My Gastro doctor now angry that the previous Gastro docs had insisted and treated me for acid reflux for 20 years and not addressing my chest pains which have increased.What I have always relayed to doctors was the unusual amount of phlegm I would produce.. now to find out it’s actually saliva from food sitting in the esophagus. I too have woken up choking. Mostly mine was I the morning but over the years seems like all day. I am seeing my doctor this week to get more answers and go to the next step.
Taking advice of others to find a doctor who specializes in treating Achalasia. I want to do everything in my power ti take the correct path. I’m sure we will be conversing more and hope you are happy with your new doctor. 😊
I go tomorrow and have so many questions. I am anxious about going but all these years having my throat stretched I am glad to know why. I'm in osceola county fl. And my sister is looking for the best dr in fl. Who is a specialist in this disease. The dr tomorrow has great credentials and did diagnosed me following a swallow test as everything got blamed on my MS but this dr said let's do one more test. We also have the Mayo clinic here in fl and Shands. How old are you and when did you start having problems. I do suggest don't sleep flat. I would choke. And what calms my tightness in my chest or it locks up I lightly pat my chest like burping a baby and it relaxes those muscles but not 100%. I will post tomorrow evening. I'm happy you're in fl as I felt so stranded with something Noone had heard of. I pray alot. Susie
Just want to wish you well with your appointment. My chest pains started over20 years ago and misdiagnosed for Gerd.. I had learned to adjust to the Phlegm and pain until it started getting worse this last year. My sister also struggled with MS and have a sister with beginning Parkinson’s . All autoimmune as well as Achalasia so that feel all related in our genes.
Unfortunately I am taking a last minute flight out to Sloan Kettering today after my GI appointment (took 2 months to get as I’m sure you know long it takes!)My daughter and her husband traveled there to have a tumor removed.. docs were not certain if on ovary or stomach until they were in yesterday and found it in here stomach. Trying to keep stress level low because that really weighs on my spasms.
Not sure what treatment my doc will propose today. Just at then beginning of my journey but need to be as proactive as possible. Wish you well and will be in touch once my daughter is on way to recovering.
